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COVID vax and flares for those with hyper-POTS?


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I'm wondering if anyone here has had the COVID vax, especially people with hyper-POTS, and if so, how did you fare?

I live somewhere where covid cases are currently very low, but I am still looking at getting vaccinated. I'm pro-vaccination, certainly not against it at all, but I have had bad flares in the past after other vaccines before (flu jabs etc, that sort of thing), and am just figuring out what to do. Not worried about having a minor flare that lasts for a couple of days — that, I can cope with. I'm more worried about a severe flare that lasts weeks to months, which I know can happen sometimes when it comes to POTS (but I realise a COVID flare would likely be far, far worse, compared to the flare caused by a vax).

Will also be speaking to my specialist about it when I have a phone consult soon.

Thank you for any feedback.

 

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  • Scout changed the title to COVID vax and flares for those with hyper-POTS?

I had the 2 Moderna shots which my rheumatologist said are known to cause more side effects and I have hyper POTS. I had exactly 48 hours of expected side effects but the only dysautonomia symptom was a slightly elevated heart rate, roughly 10 bpm both sitting and standing. 48 hours later everything went back to “normal”.  

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I got the Moderna vaccination months ago, only a day or two of body aches.  I have OH, SFN, many symptoms. Digestive, migraines, CFS, brain fog, etc.  

I personally think Covid will be with the world forever.  Vaccinations will be essential, variants are stronger and more deadly.

I really don’t think vaccinations are a personal choice for almost all people.  The alternatives are more deaths and suffering.

Sorry for the soap box talk, but I had a few friends that did not survive Covid. 

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I got Pfizer and as far as I know do not have hyper-POTS (expecting confirmation of that today or tomorrow).  The first jab left me bed bound for eight days. Really not good.  But I consulted with three different doctors, including two dysautonomia specialists, who all urged me to get the second.  I had very few side effects from the second---less, in fact, than I was led to believe the average person might have.  

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8 hours ago, Alex D. said:

I got the Moderna vaccination months ago, only a day or two of body aches.  I have OH, SFN, many symptoms. Digestive, migraines, CFS, brain fog, etc.  

I personally think Covid will be with the world forever.  Vaccinations will be essential, variants are stronger and more deadly.

I really don’t think vaccinations are a personal choice for almost all people.  The alternatives are more deaths and suffering.

Sorry for the soap box talk, but I had a few friends that did not survive Covid. 

I appreciate the feedback, and am sorry you lost some friends to COVID. That is very sad.

As mentioned in my post: I live somewhere where the COVID cases are very low. Nowhere near like how things are in the US or UK, for example. But with that said, I still think vaccination is absolutely important and I am pro-vax, of course.

The only reason I am asking these questions is because of hearing of some people with POTS and other chronic conditions, having really bad long-term flares or allergic reactions after the vax, and not being able to function. Unfortunately vaccines do come with some risks, like all medications, and I'm simply trying to decide what's the best course of action for my situation.

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8 hours ago, CJ65 said:

I have Hyperandrenergic POTS and I had Pfizer. I expected the worst and except for a little extra fatigue and a sore arm I was absolutely fine. 

Good to hear you had no reaction! Thanks for the feedback.

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@Scout,

I believe I have hyper POTS based on symptoms, although when I was diagnosed, the doc just said, "You have POTS".  We didn't discuss various types. I debated the vaccine for a while myself; I also asked my POTS doc's opinion, who advised me to get it. But I still wasn't sure, and I just finally figured that if I got covid, whatever happened would likely be worse than side effects.  My husband and I took the J&J . . . we know a lot of people for whom the side effects of the two-jab regimen sounded pretty unpleasant. The only side effect I saw that I woud relate to hyper POTS is that for about an hour right after getting the jab, my blood pressure was up. Like, too high up. 170-something over 80-something. After a while it came back down. The other side effects were pretty garden-variety and lasted for about a day - chills, low grade fever, fatigue, headache and body aches. But no POTS flare. 

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